I have been reading this board for sometime in an attempt to find an explanation for my symptoms and had found enormous comfort in the information I had read, that was until Monday 10/09 when I received a diagnosis of MND that turned my world upside down.

A history of my case.

March 2011 approx - I was getting cramps, calf muscles then thighs, biceps, and neck. Sometimes the pain could last for days.

January 2012 - EMG "nerve and muscle tests haven't shown any specific problems with the muscles, but do suggest that at least sometime the nerves to your arms and the nerves from your neck and low back have been irritated".

"Impression: I think his symptoms are a mixture of cervical and spinal radiculopathy, anxiety and cramping Fasciculation syndrome."

CT scans next all clear.

3 July 2012 Referred to another neuro with the following notes"no evidence of myopathic process on emg, CK levels 236 in December again normal late June.

PET scan, another MRI, breathing tests all normal.

Nerve conduction studies done on 9 July "have shown a mild deterioration since the previous studies done in January 2012".

Lumbar puncture and clinical assessment appears normal.

In summary 18 months since I first had an onset of cramps, 12 months since onset of fasciculations, clinical muscle tests 5/5 on 31 August and no evidence of muscle weakness.

The diagnosis I have been given is early onset benign motor neurons disease. I queried the benign element and was informed this is because other than fascics and cramping I don't appear to have any other symptoms. My neuro wants to monitor me for 6-12 months, revisit the emg and reassess my situation if there is no evidence of weakness develops.

So as you can see, it has been a challenging road travelled over the past few months.

My current neuro is a specialist in MND and in think under the circumstances I have accepted this diagnosis quite well.

I am interested whether anyone has any specific comments as I am holding out hope that I have no degeneration in the next 6-12 months and I can be reassessed.

Warm regards and sorry for the long post.

Ian

Last edited by prattstar on September 17th, 2012, 6:25 pm, edited 1 time in total.

Ian,This is a very confusing post. Ive never heard of "Benign Motor Neuron Disease". Did your doctor tell you this or did you read it in on your last EMG/NCS? Can you tell us exactly what he/she said? You make no mention of fibs, or sharp waves, etc. Did you get another EMG in July? If so, can you type out what they wrote in their assessment? -Matt

Last edited by bobajojo on November 2nd, 2012, 7:19 am, edited 1 time in total.

Sorry for the confusion. I don't have the EMG results, the quotes included are from the letters the specialists wrote to me, my GP and to each other.

I don't understand a lot of it and don't have specific Details.

The diagnosis is what I was given. I specifically asked the neuro what my condition was called and was told it is early onset benign motor neurons disease.

It is only some days later that I asked about the benign element and was informed because I don't have any other symptoms at this stage but clearly there is something on one/more of my tests that supports this diagnosis.

OK, I have personally never heard of benign motor neuron disease, but I just googled it and found this study. Here is the abstract:

Two patients had a delayed syndrome of benign fasciculation after complete recovery from paralytic poliomyelitis and a third had the syndrome after an attack of purely motor myelitis. Myalgia was prominent in all three, and two had frequent cramps. Denervation hypertrophy occurred in two. The patients were observed for at least three years, and no new weakness was seen. These cases suggest that some chronic diseases of motor neurons may be benign.

So, I think the key word right now is "benign". I think you might want to ask more questions to find out exactly what they think this is. Just my 2 cents.

prattstar wrote:I am guessing I could ask for the EMG report, would that help?

It would probably help you to understand what is going on, but it will not enable anyone here to provide you with any insight. As Matt says, this is a completely confusing and self-contradicting thing to be told by a specialist. You really need to ask these questions of the specialists who are making these statements.

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

Ok Matt, you are going to have to reassure me today. After reading the previous post I have suddenly gone into panic mode. I have been twitching for 6 months, more in my right foot than anywhere else. It did spread all over however it has drastically subsided but when I do twitch it is in my right foot. My body will jerk, just a little, occassionally, nothing to horrible though. I have also had some hotspots and I have experienced tingling sensations. Went to neuro, only had a clinical examine, diagnosed BFS. No muscle weakness. Do I need to be concerned? Also, if I were to be part of the rare group that twitched before an MND diagnoses how long would you have to twitch to notice muscle weakness?

My Neuro said i am more or less identical to this case and i would hazzard a good guess that you are the same. I have chronic denervation , neurogenic changes long duration MUPs Fasciculations etc every thing you have mentioned i have had written on my EMG reports I have also since lost all deep tendon reflexes at knee and ankle. I have not had any real motor strength loss of my muscles for over 6 years and so still remain with what my neuro calls a benign lower motor neurone syndrome disorder.

Hope i can give you some hope that its not all doom and gloom as i still get on with my life and still play a gentle sport to a competitive level and my condition has remained pretty stable in the 6+ years since onset.

Clearly the Neuro doesn't share your educated view, i have been prescribed riluzole which is the only approved drug for MND to delay the onset of further symptoms for as long as possible. I wouldn't have thought they would do that if they thought it would always remain benign.

I don't have a lot to gain by scaring anyone. I'm looking for answers not conflict.